Communicating with Patients Who Have Developmental Disabilities

Communicating with Patients Who Have Developmental Disabilities

As a nurse, being able to communicate effectively with patients is crucial. But communicating with patients who have developmental disabilities may be more difficult at times.

Georgia Reiner, Risk Specialist, Nurses Service Organization (NSO), knows how to interact with these types of patients and answered our questions on what you can do to communicate with them better.

Why should nurses communicate differently with patients with developmental disabilities? When do they need to make sure that a parent or guardian is there?

People with developmental disabilities such as Down syndrome or who are on the autism spectrum face significant barriers to accessing quality care. Inadequate communication between the patient and health care providers is one of those barriers that can result in harm to the patient. Effective communication is the keystone for ensuring quality, patient-centered care for patients who have developmental disabilities. With skill and patience, nurses can help keep patients safe.

It is important to ask patients if they want their support worker or caregiver to stay with them.

What should nurses do to communicate better with these specific patients?

In order to communicate better with specific patients, nurses must establish the patient’s communication strengths and challenges and tailor their approach accordingly. Nurses need to document preferences in the patient’s health record so that they are accessible to all members of the team.

It is also very important for nurses to allow enough time to listen and understand that interactions may take longer. Nurses need to know that differences in muscle tone for some individuals may complicate reading their facial expressions or body language. Additionally, it is important to choose appropriate, concrete language. Explaining concepts clearly and directly while using specific words and visual aids can be very helpful.

How can they make sure that they are being clear while not “talking down” to these patients?

Nurses can make sure that they are being clear while not “talking down” to these patients by establishing rapport. They need to make sure that they are speaking directly to the patient—as opposed to a family member or caregiver—when possible. It is also important to avoid talking to an adult as if he or she is a child. Nurses should take time to assess the patient’s understanding and to validate their own perceptions to make sure they are understanding the patient. Nurses are encouraged to use the “teach-back” method to ask the patient to repeat the information back to them.

What are the most important concepts that nurses should keep in mind when communicating with these patients?

It is important for nurses to give patients with developmental disabilities exact instructions and explain what they are doing in sequence. Try to eliminate distractions where possible, by meeting in a private, quiet room.

Nurses should also avoid asking abstract questions, and instead be direct. For example, ask “Are you tired?” instead of “How do you feel?”

If the patient uses a communication device that you are not familiar with and the patient cannot show you how to use it, ask the caregiver to do so.

Let patients know they can bring a favorite item they like to have with them in order to help regulate sensory stimuli.

What should nurses never do while communicating with these patients?

Nurses should never shout; speak slowly, in a normal tone of voice.

Nurses should never assume that their body language and facial expressions will be understood. Respect differences in communication style. For example, many patients with autism spectrum disorder prefer avoiding eye contact.

Nurses should never touch a patient without telling them when and where before doing so. Act out or demonstrate actions for patients who prefer non-verbal communication.

What else is important for our readers to know about communicating with patients with developmental disabilities?

People with developmental disabilities deserve the best possible care from health care providers, including preventive health measures and appropriate management of health conditions. By being knowledgeable on how to effectively communicate with patients who have developmental disabilities, and practicing different communication strategies, nurses can become more confident, and provide patient-centered care. Through thoughtful communication and collaboration with caregivers, family, and the interprofessional team, nurses can help achieve the goal of optimal care—and optimal outcomes.

Nurses are only one segment of the interprofessional team, but they are frequently the strongest patient advocate. At the end of the day, working as a team, advocating for patients, providing information and education in the patient’s preferred communication style, and collaborating with caregivers and family members, can help nurses end the stigma of caring for patients with developmental disabilities and achieve the goal of optimal care and outcomes.

It Takes a Village: Nurses Work to Provide Culturally Competent LGBTQ Care

It Takes a Village: Nurses Work to Provide Culturally Competent LGBTQ Care

As a gay man, Austin Nation, PhD, RN, PHN, understands the health care barriers faced by many lesbian, gay, bisexual, transgender, and queer (LGBTQ) patients. As a nurse and educator, he’s working to increase awareness and address the health disparities that continue to exist in the LGBTQ community.

An assistant professor of nursing at California State University, Fullerton (CSUF), Nation lived through the 1980s AIDS crisis, and has worked with many patients in the HIV/AIDS community. While he acknowledges an HIV diagnosis is no longer a death sentence thanks to increased funding and better treatment, Nation has also seen how young gay black and Latino men continue to be disproportionately affected by HIV/AIDS. The Centers for Disease Control and Prevention (CDC) report that 1 in 2 black men and 1 in 4 Latino men will be diagnosed with HIV during their lifetime.

“We’re not reaching all of the people we need to reach,” Nation says. “In order to get to zero new HIV infections, we need to figure out how to engage these populations.”

While treatments have transformed HIV into a chronic but manageable illness, many people are not aware of how prevention efforts that use antiretroviral treatment, and pre-exposure prophylaxis (PReP), an HIV-medication that when taken consistently, can lower the risk of getting infected by more than 90%. Despite being widely available, the CDC notes that while two-thirds of the people who could benefit from PrEP are black or Latino, they account for the smallest amount of prescriptions to date.

To that end, Nation has worked to address the tenuous relationship many people of color and members of the LGBTQ community have with the health care system. Statistics from the Kaiser Family Foundation show that LGBTQ patients often face challenges and barriers in accessing health services including stigma, discrimination, the provision of substandard care, and outright denial of care because of their sexual orientation or gender identity.

“I’ve led LGBTQ cultural competency trainings to teach nurses and nursing students how to provide inclusive services and care for LGBTQ patients,” Nation says. “By knowing whether a patient is gay, lesbian, transgender, straight, or bisexual, and how to best communicate, nurses can identify potential health disparities and care for their patients more effectively.”

On the CSUF campus, Nation has also been a part of the university’s Faculty Noon Time Talks, discussing health care disparities within the African American community. In addition, he is working with faith leaders to adopt a more inclusive environment for LGBTQ individuals who may be reluctant to come out and subsequently don’t receive HIV testing or prevention counseling.

“I also teach a public health course at CSUF where we discuss vulnerable patient populations including the LGBTQ community,” Nation says. “I try to integrate real-world experiences into the course curriculum.”

Nation believes that all nurses can help to achieve diversity and meaningful inclusion, whether they are part of the LGBTQ community or an ally. “Have a voice and be an advocate,” he says. “One person can make a difference.”

Navigating Cancer Care with LGBTQ Patients

As an oncology nurse and LGBTQ advocate, Megan Ober, RN, MS, BSN, OCN, a case manager at the Palliative Care Clinic at the UC Davis Comprehensive Cancer Center in Davis, California, often finds herself bridging the gap between providers and LGBTQ patients.

“Many health care providers work under the assumption that all patients are heterosexual,” says Ober. “It’s important to create a welcoming environment for LGBTQ patients in order to educate them on cancer risk factors and ensure they receive preventative screenings.”

Ober says LGBTQ patients often feel they are being judged and are reluctant to share their sexual orientation or gender identity out of fear of being turned away from health care providers. This distrust can lead to some LGBTQ not seeing a doctor regularly for check-ups and screenings, delaying diagnoses and not receiving information on treatments that might help either their physical or emotional health.

Over the years, Ober has given presentations to staff on LGBTQ disparities in cancer care and risk factors that lead to greater cancer incidence and later-stage diagnoses. These disparities include:

  • Anal cancer. It’s rare in the general population, but 34 times more prevalent in gay men.
  • Cancer screenings. According to the American Cancer Society, lesbians and bisexual women get less routine health screenings than other women including breast, colon, and cervical cancer screening tests.
  • Breast cancer. Lesbian women have higher rates for breast cancer including nulliparity (never having given birth), alcohol and tobacco use, and obesity.
  • Cervical cancer in transgender men. Since most transgender men retain their cervixes, they are also at risk of cervical cancer but are much less likely to obtain Pap smears and regular cancer screenings.

 

Resources to Bring Better Care to LGBTQ Patients

For nurses who want to educate themselves further about LGBTQ health topics, the following information can help:

  • Lavender Health has held virtual coffee hours for nurses working with LGBTQ populations. Their website offers events, resources, and more to help both providers and members of the LGBTQ community promote wellness.
  • The National Resource Center on LGBT Aging offers cultural competency training for staff at nursing homes and others who care for seniors. They also have downloadable guides on creating an inclusive environment for LGBTQ seniors.
  • The U.S. Department of Health and Human Services offers a free downloadable guide, Top Health Issues for LGBT Populations Information and Resource Kit.
  • On a national level, organizations such as the National Alliance of State and Territorial AIDS Directors (NASTAD) has partnered with the Health Resources and Services Administration’s HIV/AIDS Bureau (HRSA-HAB) to launch HisHealth.org, a free online tool that helps nurses and other medical staff learn how to engage HIV-positive young black LGBTQ patients and young black transgender patients by taking a whole-health approach to wellness.
  • Organizations such as the Human Rights Campaign and their Healthcare Equality Index can help with training and best practices such as making changes to electronic medical records and hospital paperwork to incorporate sexual orientation and gender identity and criteria that hospitals can use to become Equality Leaders.
  • The National LGBT Health Education Center has a free downloadable guide, “Providing Inclusive Services and Care for LGBT People: A Guide for Health Care Staff.” The guide discusses using preferred pronouns and preferred names, understanding diversity and fluidity of expression, making LGBTQ patients feel comfortable, common health issues among the LGBTQ population, and much more.

While it can be difficult for nurses to begin a conversation about a patient’s sexuality and sexual health, Ober says it’s important for providers to ask in order to care appropriately for LGBTQ patients.

“Rather than assuming all patients are heterosexual, I recommend nurses introduce themselves and ask a patient how they would like to be addressed, their chosen name, and their preferred pronoun,” Ober says. “There’s a great training video on YouTube called ‘To Treat Me You Have to Know Who I Am’ that showcases a mandatory employee training program that was launched for health care providers in New York.”

Ober also cautions against assuming the personal info on a patient’s chart is correct. Often, people who are transgender may identify as a different gender than the one listed on their electronic medical record.

“Rather than greeting a patient with a title such as Mr. or Ms., I encourage nurses to ask patients how they would like to be addressed,” Ober says. “Shifting from a heteronormative model to one that is more inclusive acknowledges that patients and families aren’t all the same. The woman sitting by your patient’s bedside may be her wife, rather than her sister or friend.”

Nurses Lead the Way with Change

Caitlin Stover, PhD, RN, chair of the national Gay and Lesbian Medical Association (GLMA) Nursing group says both nurses who identify as LGBTQ and those who are allies can work to create an inclusive environment for LGBTQ patients.

“I’m an ally that joined GLMA and now I’m chair of the organization,” Stover says. “There are so many resources out there that can help nurses become better patient advocates and deliver culturally sensitive care to LGBTQ patients.”

Stover says while many nurses across the country are doing great work in creating an inclusive environment in their hospital units and establishing trust and rapport with LGBTQ patients, there are still many nurses and providers who have not received education on LGBTQ health issues.

“It’s important for nurses to strip themselves of preconceived notions, judgements, and assumptions,” Stover says. “Our job is to provide the best possible care, regardless of a patient’s age, ethnicity, gender, or sexual orientation.”

She cites the Guidelines for Care of Lesbian, Gay, Bisexual, and Transgender Patients downloadable PDF created by GLMA as a good starting point for nurses who are seeking advice on how to communicate with LGBTQ patients using sensitive language. The document also includes guidelines for forms, patient-provider discussions, and more.

Continued Education Leads to Better Health Outcomes

Learning about LGBTQ patients isn’t a topic that is always covered in nursing school. A national survey conducted in 2014 found that 43% of nursing faculty who taught in bachelor’s degree programs across the United States reported limited or somewhat limited knowledge of LGBTQ health. Between 23-63% of respondents indicated either never or seldom teaching LGBTQ health, although a majority of respondents felt LGBTQ health should be integrated into the nursing courses they teach.

In 2013, Columbia University Medical Center in New York launched the LGBT Health Initiative, based at the Division of Gender, Sexuality, and Health at the New York State Psychiatric Institute and the Columbia University Department of Psychiatry in association with the Columbia University School of Nursing. The goal of the initiative is to bring together research, clinical care, education, and policy to fight stigma and improve the health of the LGBTQ community.

Janejira J. Chaiyasit, DNP, AGNP-C, an assistant professor at Columbia University School of Nursing and a nurse practitioner at ColumbiaDoctors Primary Care Nurse Practitioner Group, says students at the Columbia School of Nursing receive training on LGBTQ cultural competency as part of their studies.

“We highlight the unique health disparities, risks, and health needs of the LGBTQ patient population to increase awareness, so that our future providers and care takers will offer appropriate care and ask the right questions,” Chaiyasit says.

At Columbia, Chaiyasit has seen how promoting inclusivity and culturally competent care has led to better patient care and health outcomes, and how training staff and students adequately prepares them to care for LGBTQ patients.

“If a patient doesn’t feel comfortable, how can we expect them to divulge their personal health concerns to us, and, in return, enable us to give them the best care?” Chaiyasit says.

And despite progress that has been made nationally, Chaiyasit says there’s a continued need for nurses to learn about the differing health needs of the LGBTQ community.

“LGBTQ patients have a lot of health disparities and changing the preconceptions of health care delivery for this community is a way to close the gaps—reducing ER visits, reducing the time to access health care for medical and psychosocial issues, and increasing the rate of preventative health screenings,” Chaiyasit says. “For example, many health care professionals are unaware of the health needs for trans patients, specifically these patients’ needs for transition-specific hormone therapy care and maintenance to achieve the desired gender features. This is really important as it impacts physical and mental health as a whole.”

In addition to nurses becoming more aware of gender-neutral language, many hospitals have begun customizing their patient intake forms to ensure they are LGBTQ-inclusive.

“At Columbia, we piloted intake form questions, which were ultimately implemented across the Nurse Practice Group, that allow patients to select, or even write in, their preferred gender identity pronouns,” Chaiyasit says. “A complete patient history helps to ensure each patient gets the care and services they need.”

Recognizing Minority Mental Health Awareness Month

Recognizing Minority Mental Health Awareness Month

Mental health is no longer a taboo topic in much of society, but for many minorities, the stigma is still strong and prominent. July is Minority Mental Health Awareness Month to help those affected by mental health conditions get the treatment they need and begin to erase the stigma through education and awareness.

In general, people are talking about mental health much more than they ever did before. Advertisements for drugs to treat depression and bipolar disorder are common; celebrities openly discuss their mental health challenges; and support groups are often well attended across the country.

But for minority groups, the stigma of mental health struggles is often present. While some groups in the country feel freer to make their challenges known, minorities often struggle with mental health in silence. Afraid to bring their symptoms to light, they often don’t get the treatment that could help them feel better and make their lives easier.

As nurses know, mental health is a physical condition. It might be called mental health because it affects the brain, but anyone with a mental health disorder is struggling with a physiological disease. But because the topic has been taboo for so many for so long, the freedom to be honest about their disease remains elusive.

As a nurse, you can be especially in tune to these startling facts from the Office of Minority Health:

  • Over 70% of Black/African American adolescents with a major depressive episode did not receive treatment for their condition.
  • Almost 25% of adolescents with a major depressive episode in the last year were Hispanic/Latino.
  • Asian American adults were less likely to use mental health services than any other racial/ethnic groups.
  • In the past year, nearly 1 in 10 American Indian or Alaska Native young adults had serious thoughts of suicide.
  • In the past year, 1 in 7 Native Hawaiian and Pacific Islander adults had a diagnosable mental illness.

According to the American Psychological Association, minorities have additional roadblocks. Even if they are ready to get help, they often lack access to high-quality mental health care and treatment. There might not be enough providers or those providers might be hundreds of miles away. Providers who take insurance might be hard to find and those who offer culturally competent care might be even more sparse. Speaking with a provider who isn’t aware of the cultural stigmas against minority mental health issues in a specific community could make the patient feel even more isolated.

You can learn more about the barriers to adequate care in your own community and begin to seek out solutions. Finding a few culturally competent providers, keeping a list of online resources, and referring patients to trusted specialists if they are available can be a big help as can keeping a compassionate and factual approach to patients who are struggling with symptoms and with stigma. If they are treatment resistant, you still have a powerful tool in voicing that mental health is a imbalance of brain chemicals, is not their fault, and that help is available.

Being an open ear can also help someone who is having a tough time but is reluctant to get help. Urge them to get relief, offer helpful resources, educate them to dispel myths they may be holding, and work with your team to raise awareness and ensure no unconscious bias exists.

Reflecting on Black History Month and Nursing

Reflecting on Black History Month and Nursing

As Black History Month draws to a close, now is an excellent time to reflect on all the nurses who paved the way for today’s increasingly diverse nursing workforce.

The numbers still don’t reflect the levels of diversity in the country as a whole, or even necessarily in the settings where they work, but African-American and black nurses are entering the nursing profession and earning advanced nursing degrees in greater numbers than ever before.

According to the Bureau of Labor Statistics, the nursing workforce is achieving greater diversity, but there’s still a long way to go. While the 2015 National Nursing Workforce Study stated 19.5 percent of nursing respondents reported a racial or ethnic minority background, the rate was even higher among newly registered nurses.

With a nod to early  black nurses like Sojourner Truth or Harriet Tubman, who each paved the way for minority nurses to follow, nurses are expanding into many specializations and gaining higher degrees. With the current push to have 80 percent of nurses educated with a completed bachelor of science in nursing by 2020, higher ed and advanced degrees are an important part of getting ahead in nursing. Of the 176,000 nurse practitioners, 8.5 percent are African-American. And of the 3,102,000 registered nurses, 11.9 percent are African-American.

Minority nurses continue to make big strides in increasing the diversity of the overall nursing population. According to American Association of Colleges of Nursing (AACN) figures, the percentages of black or African- American nurses earning master’s or doctoral degrees has increased significantly in the past 10 years.

In 2006, 10.6 percent of those earning doctoral degrees were African American. In 2016, that percentage jumped to 16.2.  And in those same years, the number of those earning master’s degrees also saw a percentage jump. In 2006, 11.3 percent of those going for a master’s degree were black. Ten years later, the percentage was 14.3. Overall, the percentage of minority nurses seeing nursing degrees hovers at about 30 percent of the total.

All that good news helps patients who say they want to see a diverse workforce in the healthcare professions. Many patients feel comfortable with someone who looks like them, but, more importantly, a diverse workforce helps spread culturally competent nursing practices. The entire nursing staff may not represent the ethnic diversity in a given setting, but they can learn from those who might understand certain cultural traditions, languages, or practices. All that understanding makes for better patient care and outcomes and an especially effective nursing staff.

So as Black History Month draws to a close, take a few moments to reflect on how far African-American and black nurses have come and the essential care and understanding they provide to the public. And take a moment to take pride in being part of that.

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